Friday, April 30, 2004

Home from UCLA

We are home from UCLA and our trip was shorter than anticipated. The short story is, they think that Jenelle is not going to be a candidate for surgery. While heartbreaking, we knew this was a strong possibility. We were very impressed with UCLA and their "team" approach. We were admitted on Wednesday morning and Jenelle immediately gave them quite a performance. She started seizing about 2 minutes after they applied the EEG monitor. She had many seizures throughout the course of the day.

Wednesday afternoon we were visited by Dr. Shields and his nurse Sue Yudovin. It was wonderful to see them, and he check out Jenelle and commented that her tone was much improved since he'd last seen her 5 weeks ago. We told them we were already recording seizures and he thought that was great. They told us they would know quicker if surgery wasn't an option, than they would if it were. Later that day, we were visited by the "Team" which included about 8 to 10 med students, doctors, residents, attending, etc. Just like on TV, they swarmed over Jenelle, asked questions and made observations. I just stood in a corner in awe. They told us they already had a lot of seizure information on the EEG, but would continue through the night to see what they could get.

At 3:30 a.m. on Thursday, Jenelle had a grand mal that lasted approximately 7 minutes. This is the first one she has had for over 5 weeks and since starting Klonopin. It was also the longest one she's ever had. We had to use oxygen because her lips were turning blue- if we'd been at home, I'm sure we would have called 911. She seized for another hour after the grand mal and if they weren't recording the information, we'd probably would have medicated her with emergency meds (valium) to stop it. Oh, and all of this seizure activity was happening while Jenelle was still on her full meds. They were only intending to stop her "cold turkey" if she wasn't giving them anything, so like I said, she really performed well. Many other parents we know often spend days in the hospital and never record a single seizure on an EEG. We not only got her regular ones, but a grand mal as well! If anything, I think prayers were answered in that we have no doubt that UCLA got to see all of Jenelle's different seizures, so in essence, they gave us their opinion based on all the information, which in itself is a blessing. Or, as Brett says... "we need to tell everyone to stop praying for seizures because they over did it!" ;)

Overall they got a lot of information from the EEG. She is still having infantile spasms, myoclonics, tonic/clonics as well as EEG patterns that resemble seizures but are not (basically abnormal brain waves). She is not a candidate for surgery because there was no "focal point" to her seizures, and most likely at this point, she is moving into Lennox Gassteau Syndrome (LGS.) As some of you may recall, LGS is the more "devastating" type of Epilepsy, where most end up severely mentally retarded, or have a short life expectancy.
They ran the PET scan on Thursday, but not the MRI as we had a conflict in finding (or rather in keeping) the anestheologist. We have to go back up to do that as an outpatient in the next week or so, and we will return in a month to see Dr. Shields. Even though they are confident from the EEG that surgery is not an option, they want to do the entire work up to see what they can recommend. There are still different drugs we haven't tried, and of course, the Ketogenic diet may still be an option.

Jack took our leaving for "the hospital" very hard this time. When we left him at daycare on Wednesday, he cried hysterically. The night before I told him we had to take Jenelle to the hospital, and he asked, "where am I going to stay?" He's been temperamental, but overall is handling this well. We spent most of today spending special time with just him.

Brett and I are doing OK. We not sure what our next step will be as far as treatment, and we are somewhat disappointed. We truly appreciate all of your prayers and support during this time. You have no idea how much it means to us.

I'll update when we have some new results.

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